ObjectivesTo: (1) complete an integrative literature review of transition studies that focus on individuals with intersex traits; (2) conduct an environmental scan of the current resources (practice guidelines, policies and procedures) used by healthcare providers working with Canadians with intersex traits; (3) investigate the experiences of Canadians with intersex traits in their healthcare transitions across the lifespan and (4) assess the understanding of healthcare providers about these transitions.DesignA qualitative prospective community participation study was conducted. It used mixed methods including an environmental scan and semistructured engagement sessions.SettingThe environmental scan examined resources available throughout Canada. The engagement sessions took place in British Columbia and Ontario, Canada.ParticipantsSixteen participants were recruited. These included 13 individuals with intersex traits (a heterogeneous group of congenital conditions affecting the development of sex characteristics) and three caregivers.MethodsMixed methods included an integrated literature review, environmental scan and qualitative approaches developed in collaboration with community partners.ResultsThe literature review identified gaps in transition care for individuals with intersex traits. The environmental scan uncovered no specific resources used by healthcare providers working with patients with intersex traits, though several general guidelines were used. Engaging providers in the study was problematic. Thematic analysis generated three main themes that emerged from the engagement sessions: (1) transition is a lifespan activity; (2) building personal agency is valuable and (3) well-being promotion is an application of health literacy.ConclusionsTransition resources for individuals living in Canada with intersex are scarce. Transitions happen across the lifespan with ownership of thought and actions seen as acts of personal agency. Health literacy skills and knowledge change with increased age, yet the primary source of knowledge often remained important in the individual’s autobiographical self.

Informed decision-making and considerations of the child’s best interest offer a starting place for building informed and lifelong discussions that promote the long-term interests and the wellbeing of individuals experiencing differences in sex development (DSD) or intersex traits. Parents require sufficient information and support to understand what ‘doing something and doing nothing’ really means when learning about non-surgical options. This may take the form of health literacy support, asking how parents are given access to meaningful and understandable information, as well as psychosocial support and psychological care. Timely psychological assessment and interventions that support informed decision-making actions are an essential aspect of holistic care with children and youth with DSD and their parents. Without actionable tools or approaches parents cannot make informed decisions about their child’s health and, as such, health literacy is a key attribute to aid decision making for both parents and children. As individuals with DSD become increasingly adept at building resourcefulness, gathering and applying knowledge about their bodies, limiting irreversible surgeries in childhood can afford wider life choices. To this end an educated and informed comprehensive and helpful multidisciplinary group understands and embodies, as a whole team, the need for compassionate, emotionally supportive, and validating care in all interactions with parents of children and individuals with DSD. The paper draws on the primary author’s experiences working with the charity, dsdfamilies, concluding with actionable approaches that include supporting personal knowledge through health literacy, examining team based psychological care, and psychosocial approaches across the lifespan.

Congenital adrenal hyperplasia (CAH) encompasses a range of inherited autosomal recessive enzyme conditions that impact steroid hormone production. This lifelong condition has associated health risks for some individuals, including adrenal crisis, and menstruation and fertility issues. Health literacy materials focused on the physical and pharmacological aspects of managing menstruation (i.e., treatment to initiate or maintain menses for those with CAH) are scarce. This article addresses this gap by exploring menses patterns in people with CAH. An integrative literature review searched articles published between 2005 and 2020, and 30 articles met inclusion criteria. Study findings indicated that while menarche seems to occur at an average age for people with CAH, menstruation is commonly disrupted and irregular. Several studies reported individuals achieving regular menses and pregnancy, while others noted individuals consistently showing poor control, irregular menses, and infertility despite ongoing treatment. A few studies reported such individuals as “non-adherent” or worse “non-compliant” with their medication regimens when health outcomes were lower than expected. We emphasize that such fault finding by health service providers around adherence acts as a barrier to communication with people with CAH. We argue that a sustained and coordinated person-centred approach focusing on communication and education across situational, developmental, and organizational transitions, can promote health literacy, foregrounding individuals’ health and bodily autonomy across their life span. Future research needs to address gaps in knowledge translation that supports menstrual education for individuals with CAH. Studies should also address how medication management is assessed and adherence negotiated with individuals with CAH.

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Several large-scale surveys around the world show the most frequently reported mental health diagnoses among people with intersex variations include depression, anxiety and PTSD. Wellbeing risks are also high, with individuals with intersex variations citing suicidal thoughts or attempts across their life-course – specifically on the basis of issues related to having congenital sex variations. The population mostly attributed their wellbeing risks to negative social responses from others, difficulties around having undergone interventions, or issues around gender/identity. In the Canadian context, there is a lack of formalised, charitable Canadian wide intersex networks, advocacy groups, universal mental health care approaches, or provincial signposting to services similar to those developed elsewhere. Using a life-cycle lens, a group of international researchers came together in this collaborative Canadian study to explore health care transitions that people with intersex variations might need or desire, at various stages of their life. A key finding from this ongoing study is that transition phases have the capacity to be especially difficult in the context of mental health, such that integrating person-centred and trauma-informed approaches into care with this population is both wanted and needed. This paper specifically takes a case study approach which analyses data from two participants who identified three major themes regarding mental health impacts: ‘worth, mastery, and adequacy’, ‘isolation and inferiority’, and ‘identity and integrity’. The fourth and final theme drew on integrated medicine to celebrate emerging ‘resilience and generativity’; a positive experience that had emancipatory benefits across the lifespan.